Family Voices Issues Public Comment on HHS Proposed Rule

WASHINGTON, Dec. 16 -- Nora Wells, executive director of Family Voices, Lexington, Massachusetts, has issued a public comment on the Department of Health and Human Services proposed rule entitled "Securing Updated and Necessary Statutory Evaluations Timely". The comment was written on Dec. 4, 2020, and posted on Dec. 8, 2020:

* * *

On behalf of Family Voices, I respectfully submit the following comments on the proposed rule Securing Updated and Necessary Statutory Evaluations Timely ("SUNSET rule") (Docket No. HHS-OS-2020-0012, RIN 0991-AC24).

Family Voices is a national non-profit organization working to ensure that all children and youth with special health care needs (CYSHCN) receive high-quality, family-centered care. Through our national grassroots network, we provide families with resources to make informed decisions, work in partnerships with their children's health care providers to optimize health outcomes, and advocate for improved public and private policies.

Given their extensive and costly medical needs, CYSHCN and their families rely heavily on the Medicaid program, and also depend on services provided through other agencies of the Department of Health and Human Services (HHS). We are extremely concerned that the proposed SUNSET rule would wreak havoc on the administration of Medicaid and the other other HHS programs of importance to CYSHCN and their families. Therefore, we urge you to withdraw the proposed rule.

As you know, the Health Resources and Services Administration (HRSA) defines children with special healthcare needs as those who "have, or are at increased risk of having, a chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that usually required by children generally."/1

In 2017-2018, approximately 13.6 million children in the U.S. (18.5%) had a special health care need; one in four households (24.8%) in the U.S. had one or more CYSHCN./2

About half of all CYSHCN are covered by Medicaid, either completely or as a supplement to private insurance./3

Of particular importance to children, particularly CYSHCN, is Medicaid's Early and Periodic Screening, Diagnosis and Treatment (EPSDT) benefit. EPSDT services help to ensure that any health or developmental problems a child might have are detected early, when treatment is most effective, and that children receive the treatment they need should a problem arise. Medicaid also provides long-term services and supports (e.g., home nursing) that allow children with chronic and complex health conditions to live at home with their families, where they are much more likely to thrive, as well as services and supports enabling them to attend school. In addition, Medicaid protects families from medical bankruptcy.

As a joint federal-state/territorial enterprise, serving millions of vulnerable Americans and involving myriad public and private providers -- from one-person pediatric practices, to giant public hospitals - as well as hundreds of managed care organizations (MCOs), Medicaid is extremely complex. In fact, it isn't a single program; there are as many Medicaid programs as there are states and territories. Regulations (and sub-regulatory guidance) are essential to the administration of these programs. Regulations also help to ensure that Medicaid beneficiaries receive all the benefits to which they are entitled, and that services meet certain standards of quality.

We support the administration's goal of ensuring that regulations are necessary, reasonable, consistent, non-duplicative, and up-to-date. We believe, however, that the proposed SUNSET rule would actually lead to confusion and chaos, as some rules will likely be rescinded simply based on how long they have been in effect.

Regulations governing EPSDT, for example, are over ten years old. There are eleven sections of the Code of Federal Regulations (CFR) governing EPSDT. Under the proposed rule, each section would be considered a "regulation" subject to an assessment and review within two years after the SUNSET rule becomes effective. If an assessment determines that a regulation has a significant economic impact upon a substantial number of small entities, it would have to be reviewed to determine whether it should be retained, modified or rescinded. If the regulation were not affirmatively renewed within two years, it would automatically and arbitrarily be rescinded. If it were not replaced, then states and territories, providers, MCOs, and Medicaid beneficiaries would be left without guidance about how that aspect of Medicaid law should be interpreted and applied. Consequently, beneficiaries might be denied services they need, and the quality of care might suffer.

Moreover, the process of assessing and reviewing all HHS rules over ten years old would necessarily divert precious resources from the current coronavirus, opioid, and economic crises facing the country. Surely, this will have a detrimental impact on the administration of Medicaid and other HHS programs, and thereby on the health and well-being of CYSHCN and everyone else touched by an HHS program or activity. (Considering the coronavirus pandemic, this would include every single person living in this country.) For the reasons discussed above, we urge the Department to withdraw the proposed SUNSET rule. Should you need more information, please feel free to contact me ([email protected]) or Janis Guerney ([email protected]).

Thank you for considering our concerns.

Sincerely,

Nora Wells

Executive Director

* * *

Footnotes:

1/ Health Resources & Services Administration, Maternal & Child Health Topics, Children with Special Health Care Needs, available at https://mchb.hrsa.gov/maternal-child-health-topics/children-and-youth-special-health-needs (last visited 12/04/20).

2/ Children with Special Health Care Needs NSCH Data Brief (July 2020), Health Resources and Services Administration (HRSA), available at https://mchb.hrsa.gov/sites/default/files/mchb/Data/NSCH/nsch-cshcn-data-brief.pdf (last visited 12/04/20).

3/ Henry J. Kaiser Family Foundation, Medicaid's Role for Children with Special Health Care Needs: A Look at Eligibility,

Services, and Spending (June 12, 2019), available at https://www.kff.org/medicaid/issue-brief/medicaids-role-for-children-with-special-health-care-needs-a-look-at-eligibility-services-and-spending/ (last visited 12/04/20).

* * *

The proposed rule can be viewed at: https://beta.regulations.gov/document/HHS-OS-2020-0012-0001

TARGETED NEWS SERVICE (founded 2004) features non-partisan 'edited journalism' news briefs and information for news organizations, public policy groups and individuals; as well as 'gathered' public policy information, including news releases, reports, speeches. For more information contact MYRON STRUCK, editor, [email protected], Springfield, Virginia; 703/304-1897; https://targetednews.com